Death Literacy - Dealing with Dying: a construct relevant for care

Gerontological research on Well-Beeing (GROW II)

German Version

Project management: Prof. Dr. Raymond Voltz (Department of Palliative Medicine, University Hospital Cologne), Prof. Dr. Frank Schulz-Nieswandt (Faculty of Management, Economics and Social Sciences, University Cologne)
Contact: Prof. Dr. Susanne Zank (Faculty of Human Sciences, University Cologne)
Duration: 02/2019-12/2022
Funding: Minister of Culture and Science of the German State of North Rhine-Westphalia

Project Description

Although the generally accepted definition of "health literacy" encompasses the life course, research so far has had little to do with reflecting whether the discussion of the so-called "death literacy" could also have an influence on well-being into old age. A study carried out as part of GROW I by Groebe et al. (submitted) showed that it is not only the dying people themselves who could benefit from being confronted with the themes "dying and death", but also their relatives and residents of nursing homes in particular, since they begin to think about their own finiteness when they e.g., lose a loved one. Last but not least, the analysis of issues of "dying and death" also makes sense for caregivers whose own attitudes and attitudes towards "dying and death" and towards the "dying people" also determines how they deal with them in their daily care routine.

Often the fear of dying is unconscious, but strongly influences one's own attitudes, e.g. in relation to discussions about living wills, therapy decisions or about physician assisted suicide. The tissues "fear of dying" and "imparting competence in dealing with dying" thus concern large areas of health care and prevention. The great practical importance, however, is offset by a relative lack of scientific work on this topic. It often seems to be implicitly thought through, but rarely explicitly addressed.

Death literacy comprises four characteristics: "knowledge", "skills", "experiential learning" and "social action" (Noonan et al. 2016). In this project we would like to dedicate ourselves to the first two building blocks and to capture the "knowledge" and "skills" of older people, people with life limiting diseases, caregivers and relatives in order to plan for a "good" life and end of life and well-being into old age.

Possible research questions: To what extent does the teaching of competence in dealing with one's own dying / finiteness ("death literacy") influence well-being into old age?

Methods: Qualitative explorative study using semi-structured interview guidelines. Sample: older people (>80 years) in their homes (e.g. old people's and nursing homes, home environment) (n=10), patients (with an incurable diagnosis of different ages in hospitals) (n=10 interviews), nursing staff (in hospitals and nursing homes) (n=10) and relatives (n=10).

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